The head of a partnership that works with and advocates for people with disabilities is appealing for a change to Fraser Health policy around COVID-19 hospital protocols.

The call comes after a woman who was supported by Semiahmoo House Society died without a caregiver or family member to help her express her needs during the four days she was hospitalized.

Doug Tennant, chief executive officer of UNITI – a partnership of Semiahmoo House Society, Peninsula Estates Housing Society and The Semiahmoo Foundation – said 40-year-old Ariis Knight was admitted to Peace Arch Hospital with breathing difficulties on April 15, and died Saturday evening, less than an hour after those close to her were advised that her condition had taken a turn for the worse.

“A part of this that makes me really sad is this lady, this woman, had to die without her family or the people who cared for her in the group home, and really cared about her and loved her… telling her that she was loved and that she had value on this Earth,” said Tennant.

Tennant said his concern isn’t with the “heroic” care that frontline workers at PAH have been providing during the pandemic.

“They’ve always done fantastic work. This is about a policy that needs to be changed.”

Currently, non-essential visitors are not allowed at any Fraser Health site, however, Tennant said he’s been told – and information on the health authority’s website confirms – that there is an exception to the policy, which allows a designated person inside if the need is tied to tasks like feeding and personal care.

That definition of “essential” needs is incomplete, he said.

“When decisions are being made, communication and supporting people to make informed decisions needs to be a reason why people can go into the hospital to support someone,” Tennant said.

“To me, it’s about fairness. If a person without a disability goes into hospital, they’re able to communicate their needs. The same respect needs to be given to people with disabilities, who need support to do those things.”

“One of the things that I hope comes out of here is that there would be an exception made for people who need a support person there. It’s not a matter of treating people with disabilities different, it’s actually a matter of treating people with disabilities the same.”

Tennant said Knight had been supported by SHS for the past decade. He described her as someone with a bold sense of fashion, a huge personality and a smile that lit up whatever room she was in.

While she was non-verbal, those who knew Knight best and had supported her over the years knew her every facial expression or sound, what each one meant and how she was feeling – it’s a level of understanding that is unfair to expect of frontline workers, he said.

“She is a person who communicates in ways other than speaking,” Tennant said. “The people that had worked with her for 10 years really could understand what she was communicating even though she didn’t communicate by speaking.

“That would be very difficult for hospital staff to figure out. In fact, it would be asking too much for hospital staff to try to figure out how someone communicates when it takes people two years or so to get to know someone. That’s not a fair expectation to put on hospital workers in a short period of time.”

Jessica Fletcher, a member of a group comprised of advocates and families members that Tennant said formed to advocate for people with disabilities during the pandemic, shared similar concerns with PAN by email Wednesday evening.

With Knight’s caregiver being denied entry, she was left “with little ability to communicate with medical staff, and in particular likely unable to effectively express her discomfort or pain,” Fletcher writes.

“Over the ensuing days, her condition changed, yet her caregivers, the service provider, and family were all kept in the fog.”

In a statement to PAN Thursday, Fraser Health officials said efforts were made to reach out.

“Our thoughts are with this family during this difficult time,” the statement begins.

”No patients receiving end of life care have family members turned away from visiting. In this case, when it became clear that this patient was coming to the end of their life, we proactively reached out to have the family come to hospital.”

Fletcher said “many” questions remain regarding the situation, including around the lack of communication to Knight’s family and caregiver regarding her deteriorating condition.

She echoed Tennant’s sentiments that the communication concerns could have been avoided had a family member or caregiver been allowed to be with her.

Fraser Health announced COVID-19 restrictions in early March, limiting emergency and outpatient clinics to one adult caregiver or support person. In late March, B.C.’s five regional health authorities banned non-essential visits at all sites, with essential visitors allowed in through controlled access points only.

Fletcher said despite assurances from government, health authorities “are not on the same page and not able to make necessary exceptions to current protocols for personal attendants for people with disabilities.”

She also shared an April 14 letter that was penned to provincial and territorial ministers by federal Ministers Carla Qualtrough and Patty Hadju, in which the ministers share concerns and challenges that have been brought to their attention by Canadians with a disability.

“Despite our collective efforts, persons with disabilities across the country are worried and expressing that their unique needs are not being taken into consideration, and that they are not being treated equitably,” the letter states.

Among four issues highlighted is a need to work with hospitals “to make an exception to any blanket prohibition of visitors when a person with a disability requires assistance with vital services like communication, caregiving or supported decision-making.”

A COVID-19 Disability Advisory Group – comprised of experts in disability inclusion – was established, they write, “to provide advice on the lived experiences of persons with disabilities during this crisis; disability-specific issues; challenges and systemic gaps; and strategies, measures and steps to be taken in response.”

Earlier this month, Surrey South MLA Stephanie Cadieux issued a call for greater action to address the impact of the COVID-19 crisis on people with disabilities.

In an op-ed submitted to PAN, she describes the individuals as “disproportionately impacted,” citing greater risk of complications due to underlying medical conditions; discrimination and barriers in access to information, services and health care; challenges created by self-isolation and physical distancing; and more.

Thursday, Cadieux expressed condolences to the woman’s family and those who cared for her, but said she could not comment further on the case, as it was not something she had direct knowledge of or was involved in.

At the same time, “it does seem to underscore what I’ve been saying, what the disability community’s been saying, about the need for clearer protocols in circumstances where there are people who can’t communicate for themselves or require one-on-one care on a daily basis that is not nursing,” she said.

“As I learn about the details of this situation, it will re-energize my push with government for clarity around these protocols, and the rights of people with disabilities… and what does that mean when it comes to a person with a disability who has the need for personal support for communication or care.”

Cadieux maintained that an advisory group similar to that announced by the federal government is needed in B.C. as well.

Provincial health officer Dr. Bonnie Henry also spoke to the issue of communication challenges for people with disabilities during her daily update Thursday afternoon, stating there are exceptions to the restrictions that are in place at long-term care facilities and hospitals, “to ensure that people who have these extra needs around being able to verbalize or have other issues in not being able to communicate effectively or hear.”

“We do believe that there is accommodation being made,” Henry said. “My expectation is that there is accommodation being made.”